Human Genetics Alert

Press Information

1/10/2001: For immediate release

Leaked government documents posted on web

HGA analysis reveals government and industry plans to use NHS patients for research

Leaked Department of Health documents, from a panel advising the government on a forthcoming Green Paper on Genetics in the NHS, have been posted on the website of the Genetic Engineering Network, at http://www.geneticsaction.org.uk/sellingUkDna/. The documents include papers by two biotechnology industry representatives, minutes of the panel's meeting, and a draft outline of the Green Paper.

The Network asked Dr David King of Human Genetics Alert to analyse the documents. His analysis shows how government and industry want to:

turn the NHS into an 'Rand D test bed' for the drugs industry, by creating a national database of patients' medical records and genetic profiles, and selling access to the data to drugs and biotechnology companies;

privatise genetic testing services;

marginalise the government's ethical advisers, the Human Genetics Commission, because it conducts its business in public and is not dominated by industry.

Amongst the many concerns that these proposals raise are whether patients will be properly counselled about taking genetic tests, or informed that they are taking part in research, the possibility of genetic discrimination if patients' confidentiality is violated, the lack of regulation and whether the financial benefits of such research will be passed on to patients and the NHS.

Dr David King of Human Genetics Alert said: "Government and industry must not be allowed to genetically engineer the NHS, to suit industry priorities. The GM food debacle ought to have taught them that it is disastrous to allow the interests of industry to override ethical and social concerns. We must have a democratic debate about how the genetics revolution is to be applied in the NHS."